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The daughter of an Alzheimer’s patient at the centre of a right to die case says her mother often spoke about “allowing non-responsive people to die.”

Danielle Tuck, a B.C. Liquor Store manager in the community of D’Arcy, makes the comments in an affidavit.

It is in support of a lawsuit filed last week by a lawyer representing the patient, Margaret (Margot) Bentley, and her family. The lawsuit is against the nursing home where Bentley lives for continuing to spoon-feed Bentley contrary to her living will.

Bentley signed the living will — in which she asked not to be fed or given water if she develops an incapacitating, incurable disease — in 1991, nearly a decade before the now 82-year old former nurse was diagnosed with Alzheimer’s.

The two other defendants in the lawsuit are the B.C. government and the Fraser Health Authority which has jurisdiction over the Abbotsford nursing home where Bentley lives, Maplewood House.

“When I was growing up, Margot and I discussed her beliefs,” says Tuck. “She is a spiritual person, and she often told me that she believes in an afterlife and is not afraid of dying. Margot also told me that she believed in allowing non-responsive people to die.”

Bentley has been in a vegetative state since late 2011. Since then the family has pleading for adherence to the living will.

“After Margot’s diagnosis in 1999, she told me that when she worked as a nurse, she had often seen people who were suffering from Alzheimer’s disease and dementia, and said she did not want that happening to her,” Tuck says about her mother.

“I have read Margot’s Statement of Wishes, and what it says about her not wanting to be fed nourishment or liquids when there is no reasonable expectation of her recovery from extreme mental disability is consistent with my understanding of her wishes and beliefs.”

Tuck says the last time she saw her mother was in 2009 in another nursing home.

“I was shocked at her condition. At that time, she was still able to walk but had wandered off and fallen asleep in someone else’s bed. I fed her a banana piece by piece, but it was clear that she did not know who I was. Margot had a vacant look in her eyes.

“I ended up in tears seeing her in that condition.” she states. “It was clear that Margot no longer recognized me, so I have not seen her since 2009. She is no longer the person I knew as a loving mother and active and creative person.”

Statements of defence are expected to be filed within a few weeks. Nursing home operators and Fraser Health representatives have stated that they believe they have a legal duty to continue feeding Bentley. Spoon-feeding, they contend, is not the same as tube feeding.

The Bentley case has triggered an avalanche of mail from Sun readers, almost all of them outraged that the nursing home is not respecting Bentley’s wishes.

Vancouver resident June Campbell said she assumed individuals have the legal right to state their end of life wishes. “Is this action by the Fraser Health Authority not flouting the interpreted law that has been presented to the public by the government?”

Jason Swan wrote that the Bentley case would “seem to make thoroughly pointless any effort individuals make with living wills or appointing representatives on their behalf.”

Gordon Robertson decried the emotional and financial costs of the litigation: “It is intolerable that the family is forced to go through the additional emotional and financial burden of initiating a lawsuit to have the patient’s written wishes and instructions honoured,” he said in an email.

Marion Taylor wrote about the pain of having a 90-year old mother with advanced Alzheimer’s who’s being “warehoused to die an awful death.” She praises another of Bentley’s daughters, Katherine Hammond, and Bentley’s husband, John, for challenging the health authorities.

“Thank you for your public fight, so difficult for everyone involved ... my voice is loud behind your efforts which are so appreciated ... your case will make a difference,” she says.

From Cranbrook, Shirley White said she and her husband have made sure their children know their end of life wishes.”I think this is deplorable and fear this may happen to us at one time if we are admitted to hospital.”

Daniel Jones said he wonders if money is the motivating factor in not letting Bentley go. “Let people suffer if the nursing homes can bring in money. We need to support this family. It could (happen) to any of us.”

Wanda Morris, executive director of Dying With Dignity Canada, said the charitable organization has seen a stunning level of feedback from members and the general public.

“There has been a tidal wave of support for Margot and her family and various degrees of condemnation (ranging from dismay to anger to rage) of the provincial government and health authority for allowing this to happen.

“Although some individuals have empathized with care staff for being unwilling to discontinue feeding, there has been nearly universal disbelief that the care facility and the Fraser Health Authority would steadfastly refuse to transfer Margot to a place (including her daughter’s home) that would honour her wishes and would go so far as to call for police intervention if the family tried to do so,” she said, referring to a directive in Bentley’s patient chart.

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Daughter recalls mother’s wish to not be kept alive in vegetative state

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